Coming home

I have just spent about 18 months as a director of Innovations in Dementia (iD). iD has just completed 10 years – of doing what it says on the tin. I wasn’t there at the beginning. Instead I was searching for the right fit. Coming to Innovations has been like coming home.

This, however, is not meant to be a self-indulgent iD love in. Instead I want to share some of the questions, experiences and reflections I’ve had over the years in my journey that have brought me to where I am today.

I spent some time in community in Mexico and Honduras working, laughing, crying, living alongside young people with a disability, many from situations of abandon, marginalised in a predominantly ‘machista’ society. So, I was working with people with a cognitive impairment on the margins of society, seen as a burden, and measured and labelled in terms of what they can’t do – No change there then! 20 years later I’m doing the same.

The Spanish word most often used to describe the people I lived with was ‘minusvalidos’ – it literally means ‘Worth Less,’ revealing a societal attitude that required a counter cultural approach. Let’s not kid ourselves that this is a problem of so-called less developed countries because 20 years later my aim now (as it was then) is to celebrate the fantastic contribution individuals can make within their close relationships, within their communities and society at large; to highlight the gifts, potential and rights of people to belong, to grow regardless of any label.

Daily contact and living full time with and alongside this marginalised group fuelled the message we wanted to share. Back in the UK my nurse training spoke of Normalisation and Unconditional Positive Regard; of Professional Boundaries, when the people I met were just asking ‘Will you be my friend?’ Work in dementia involves a daily human encounter that too often we are pressured to ignore.

My first job in dementia was as an independent hospital-based advocate for inpatients living with dementia. I was accused of ‘feeding people on Nil By Mouth’ in my first weeks*; I was called by consultants asking me to ‘get rid of my demented patients;’ and came across countless entries in peoples’ notes ‘For placement’ (to a home) when the patient themselves hadn’t even been consulted. Things are improving now but it was because people were not fuelling their system with real contact and engagement with people with dementia experiencing the impact of hospitalisation. (*I didn’t give any food to people on Nil By Mouth, in case you were wondering!)

I remember running a carers information programme in Lincolnshire – and was stunned to receive a letter from Richard, a gentleman with dementia whose wife was on the course, demanding he have the right to attend or to receive similar input. – It was the start of a Forum for people with dementia, which we enjoyed calling the Stirrers’ group. (would have made a great DEEP group!) That fuelled so much of my work and I grew ever more uncomfortable with my one-sided job title ‘Carers’ Support Coordinator’.

Training was my thing and I joined the Alzheimer’s Society education and development team. I remember on my very first day feeling completely cut off from the reality of life of people living with dementia in community. My fuel tank would soon run dry.

I even spent time working within the long term care sector. Surely contact with real people would fuel my work again. The clear messages that people gave through their words actions and through my observations was largely unheeded. Tokenistic involvement at best prevailed in residents’ ‘committees’ within an environment too often focussing on risk aversion and a perverted idea of the meaning of security (security of locked doors over the security engendered amongst residents of feeling ‘at home’). Within a large organisation nowhere near ready to EMBRACE any sort of inclusion, I was deluding myself I was making a difference.

A colleague and I reflected recently on what might be behind the internal gatekeeping that many people possess. ‘OK I’m all for inclusion, but not really sure that person has much to offer, or this person is really capable of contributing’ – Is that the voice in your head? I have to be honest it has often spoken to me, but I knew I needed to re-focus on the real lives of people living with dementia. I helped set up York Minds and Voices, now an established group of peers within DEEP the uk network of Dementia Voices. The more time I have spent with people with dementia that internal gatekeeper has shut up!

I still encounter people who are surprised at the contribution that people with dementia can make; and they wonder how it can be done, but if you don’t immerse yourself you won’t realise how easy it is. You will see problems and inconvenience (that internal gatekeeper) and feel a heavy burden about having to tick a box.

Real contact and building relationships with people with dementia fuels new and simple ideas.

Over the last 18 months at Innovations in Dementia I feel I have thrived being involved directly or indirectly in – The growing DEEP network; the greater inclusion of people with dementia not as research subject but as co-researchers; creation of practical suggestions to help put the meat on the bones of what is now the new Welsh dementia strategy; contributions to the new NICE draft guidelines; the piloting of relationship-centred approaches through the Getting Along programme; the provision of an expanding platform to capture raw and real experiences of people through Dementia Diaries; supporting and leading plenary sessions at UK and Scottish dementia congresses; offering real examples of co-production through the Good life With Dementia course where people with dementia are course designers and course tutors.

There are fantastic projects around, and there is a real movement to properly include people in design development and delivery of services – but the inconsistency I encountered kept me moving.

iD has just completed 10 years – of doing what it says on the tin. I wasn’t there at the beginning. Instead I was searching for the right fit. Coming to Innovations has been like coming home.